Category: endometriosis

Historically, I have had the tendency to skip makeup and wear the same 10 or so outfits week in and week out. I thought this meant I wasn’t terribly particular about my appearance. But shifting from a cubicle drone to a WAHM who gets out less and less frequently has thrown me into a funk, and I finally figured out it is because I don’t feel attractive anymore. Before kids, I used to at least go out on the occasional weekend; now thanks to Kai’s threeness, I pretty much don’t go anywhere that doesn’t offer curbside service. And it’s wearing on me.

Anya got me back into the makeup habit when she was a baby (she is that girly), and I have kept it up except when my allergies are in full flare. But I tend to slide into a t-shirts-and-yoga pants rut — sometimes because they’re just comfy, but usually because I intend to exercise and don’t see the point in dirtying a second set of clothes. The problem is that I don’t feel all that attractive in workout wear. Especially since these wacko periods and the progesterone they keep giving me to deal with them have caused my stomach to swell. Spandex is not a good look on me right now. But most of my other clothes don’t fit, or do fit but are cut to emphasize a small waist, not camouflage a belly.

Enter ThredUp. While I do draw the line at some items (shoes, bathing suits, underthings), I have zero trouble wearing vintage clothing. My wedding dress was vintage, and some of my favorite outfits were picked up from Etsy sellers. ThredUp does vintage one better — these are current styles, in great shape, from brands I’m familiar with (so I have an idea of how they’ll fit me). The prices are definitely easy on the budget. Returns (available on most items) are easy. And it’s recycling!

Thanks to the sudden influx in new duds, I’ve been making more of an effort to dress nicely each day. I’ve even started incorporating colors into my wardrobe, which was starting to look very Morticia. My outfit choices are still limited, of course, by circumstance: I have to be able to nurse in it, it has to be easy to care for, and fancy fabrics are out because someone is eventually going to snot on it. (Velvet, I miss you.) But that leaves a surprising number of options. In my size. In colors that are flattering on me.

Like this:

I’m not that late this time (day 42 and counting), but my endo symptoms have been severe. Bloating like I’m 6 months pregnant. Having to hold on to furniture to walk around the house. A near-constant headache. An increasing feeling that I have a weight in my abdomen that is tethered to my internal organs, sloshing around painfully when I change position. And, probably, the sugar cravings and the emotional roller coasters. Plus hot flashes, because everything’s harder to deal with when you’re hot and sweaty.

I’m seriously contemplating another laparoscopy. You know it’s bad when I’m considering letting them cut me open and burn blobs off my innards. Especially since I only got 3 months of relief last time.

One step at a time, though. First I have to get through the Provera again. Means my aspirations of starting a cardio class are on hold for about a month, but the need to incorporate some yoga and meditation into my day has increased exponentially.

On an unrelated note, my mother’s in the hospital again. Mild heart attack this time. I haven’t talked to her in a couple of days, but she was doing well when I visited Sunday. I’ve certainly seen her look worse. Which says something about the severity of this heart attack versus the severity of the illnesses she’s suffered these past few years. She was tired, because she’d been up all night in the ER, but otherwise seemed…normal. After a heart attack. MAC infections do not play around is the message I’m deriving here.

Anya was sick over the weekend with a virus similar to the flu that was thankfully not flu. She is better now. I’m hoping Kai and I don’t catch it. It’s supposed to be up to nearly 80 today, and warmer all week; spring is on the way. I’d hate for us to be too sick to enjoy it.

Like this:

Before I even got over my sinus infection, I started my period. And it’s the period I expected to have after 90-some days. (I appreciated being let off easy last month, but I knew I’d pay the piper eventually.) So September’s kind of a wash. At the start of the month, the house was clean, I was on track with all my goals, and everything was running like clockwork. Now it’s just chaos.

I’m working on learning to better deal with derailments such as this. I read an article on the topic earlier this week, something about things like this being the down side of relying on routines. But because of the aforementioned chaos, I have lost the link and cannot find it back. You’ll just have to take my word for it: Sometimes routines fall apart, and they take the whole house of cards with them.

The first thing I’m working on is forgiving myself for the lost progress. So far I am not kicking myself too much for the blow to my workout plan; the fact that I actively miss working out means I will take it back up again just as soon as I am able. And that’s really what I am aiming for with these challenges — not to do some weird stunt for a month and then quit, but train myself to exercise each day, just as I brush and floss and clean my contacts each day. I’ve done it before; I can do it again.

Speaking of brushing, I bought a Quip toothbrush, and it’s got me brushing twice a day. I have been trying for years to get into a morning brushing habit, and never managed to pull it off. But I enjoy brushing with the Quip so much that once a day just isn’t enough. It’s amazing what a comfortable toothbrush can do. It takes some of the sting out of failing in all these other areas to have taken on a habit I’ve been trying to cultivate for over a decade.

Yesterday really drove home the need to practice regular self-care. I had just nursed Kai to sleep when I felt a sharp pain in my chest that quickly moved to my back and radiated out to my side. I ordinarily brush these things off, but I’m 43 and a former smoker with a heart murmur and a rotten cardiac family history. I felt I should rule out heart attack before I grabbed the heating pad.

I was home alone with a sleeping Kai; Anya was with my parents. I debated my options. Ask my father, who can barely walk due to an ankle injury, to bring Mom’s SpO2 meter to me, or to watch Kai so I could go to his house and use it? Wake Kai and take him over there? I didn’t think I could safely carry him. Finally, the obvious occurred to me, and I asked Mom to send Anya over with it. My levels were, as always, stellar, so I did some stretches and got on with my day.

Later on, it became obvious to me that the pain was due to stresses from my current work setup (tablet at the kitchen table) and from carrying Kai’s ever-increasing weight. Yoga and time will fix it. And if I continue doing the yoga after my back feels better, the pain likely won’t recur. But I have to make the time to do the yoga.

At the beginning of this month, I’d decided to do yoga on the days I can’t jog, but then I came down with this sinus infection. Derailed again. However, the stretches I need to do for my back do not require me to hang upside down; I can do them even with a head full of crap. So step two in my derailment management plan is to modify the plan in the face of speed bumps. No, I can’t run, or do downward dog, or do crunches. But I can, and should, do some cobras and cat/cows and half moons.

Fall is my favorite season, but it’s also the one most likely to disrupt my progress. This fall, I’m going to work on dealing with those setbacks — forgiving myself for not being able to uphold the promises I made to myself, and modifying my goals to accommodate the snags. I may not get where I wanted to go as quickly as I had planned, but so long as I do eventually get there, what does it matter?

Like this:

Hopefully I am close to starting my period; I started on progesterone this past Friday. Which means I should be starting within this next week, though my doctor did warn me it could be three weeks before it does its thing. Hope not, because I am miserable.

I saw my gyno last Friday; he told me he didn’t feel anything in my belly that shouldn’t be there (yay!), and prescribed the progesterone so I’d start my period. After one dose, I was already less bloated and swollen. (Cold, though. I remember that from my pregnancy with Kai; large amounts of progesterone make me cold.) So apparently my issue has been a hormonal imbalance? Let’s hope this course will set me back on track.

Extra progesterone also gives me pimples, apparently. And here I thought I was all but done with those.

Other updates from the checkup: It’s not possible to say whether my crazy periods are the result of perimenopause or lactational menopause. Not that there’s a huge difference in terms of symptoms now — the end result is the same, regardless of the cause — but the game could renew once I stop nursing Kai. Which, given how I’ve felt as of late, means I could have a fair amount of endo suffering ahead of me. Sigh.

On the up side, I don’t have to have a mammogram until I stop nursing. Pleased to hear that.

Especially pleased to hear I’m healthy, though. Having missed last year’s checkup due to my layoff, I was pretty nervous…especially when all these weird symptoms started cropping up.

Anya has started cooing over nursery furnishings again, and Kai has started loving up babies. And I’m just not there this time. Oh, I would adore having another baby. But it’s not the time, and I don’t think it will be again.

Like this:

One of the things I wish had been around when I was younger is period trackers. I tracked my period on a paper calendar, but all I noted was the day it started. I have random anecdotal evidence (letters, journal entries) that refer to the occasional symptom or period duration, but otherwise I’m relying on my memories for details of my periods up until the age of 35, when I was introduced to Fertility Friend. I used FF faithfully (even when I wasn’t trying to conceive) until I resumed my cycles (such as they are) after I had Kai.

I use Clue now, hence the post title. If you look at my tracker, you’ll see I track mostly custom symptoms.

The black squares are custom symptoms. (I have a lot of symptoms.)

When I was younger, tracking things like how my hair and skin were on a given day, whether I was productive or not, or how energetic I felt (all built in to the Clue app) would have been extremely useful. I remember from my TTC days that days in which I crushed my to-do list were sure-fire indicators that Aunt Flo was en route. Now I track other things: If I have trouble deciding what to wear. If I eat alllll day long. (Toying with adding “sweet or salty?” to that one, on the off chance that there’s any significance.) If my joints hurt. (I’m noticing a connection between achy joints and hormone surges, though I don’t know yet what it means.) If I had hot flashes that day. (Ditto.) If I’m cramping, or if I merely have pain in my lower back and/or my cesarean scar.

I wish more than anything there were a menopause tracker. That I could drop in these symptoms and it’d compare me to other women going through The Change and make predictions for me, like FF does with fertility. I could especially use peer comparision — matching my cycles with women my same age who also are breastfeeding. But alas. So I track my weird little collection of symptoms. Who knows — maybe I’ll notice a pattern to these crazy cycles after a while. Right now they seem so random.

It’s not that I need to track. I’ll start or I won’t, whether or not I track anything. Tracking used to give me a ballpark range for when my period might start. That sort of thing is utterly meaningless now. But it’s interesting to me to see the patterns from the 30,000 feet view. It’s also giving me a greater understanding of the inner workings of my body, much as trying to get pregnant did. (I learned a lot when we were TTC. And I thought I was well educated already!) Which means I’ll have a solid knowledge base when my daughter starts having periods. That’s coming up sooner than I can deal with.

Like this:

I’m beginning to wonder if I really am in perimenopause, or if my body is simply confused by all this breastfeeding. I haven’t had much in the way of hot flashes these past few weeks, and the rest of my symptoms could simply be related to breastfeeding. Or stress. Or endometriosis.

Let’s be honest: My body never did figure this menstruation thing out, and it’s far too late to worry about that now.

I’ve always assumed, based on my mother’s experience, that I would go through menopause early. There’s no firm basis for this belief; my maternal grandmother died at the age of 49 without having gone through The Change. But as my menstrual experience has closely mirrored my mother’s (we even started at the same age — 4 months before our 14th birthdays), I figured my end would also come at roughly the same age as hers.

But then I threw a curve: Two late pregnancies, and one extended breastfeeding experience. Even if I were close to menopause, I might have altered the end date by continuing to nurse Kai.

It also occurs to me that my interpretation of my symptoms might all be so much wishful thinking. I want to go through menopause. I love being a mom, don’t get me wrong, and it wouldn’t be awful (thought it would be rather inconvenient at this point) to have another child. But I am done with endometriosis. Done with the pain. Done with the swelling, the bloating, the mood swings. Done with wearing a panty liner day after day for months on end, just in case I might start, for fear of ruining my clothing. (Also done with ruining my clothing.) Done with periods that last 10-14 days, draining me emotionally as well as physically. Done with scheduling my life around a natural bodily function. But really — it’s the pain. The constant, unrelievable, never-ending pain. The pain that, at best, makes my entire abdomen feel like a hand that’s been slammed in a car door. The pain that feels like a spike in my tailbone. The pain that makes it hard to bathe, dress, walk, hold my children, think, breathe, be. The pain steals my hours, days, weeks.

I’m ready for the next stage. The stage in which I can produce something other than children and blood and pain.

The media bombards us with women who fight time. Who resist aging both inside and out. Women who turn to science to produce children when their bodies are past the age at which they can do so naturally. The women who nip this and tuck that. What of the women who accept it, embrace it, and move into their new role with grace — with enthusiasm?

Because there is a place for women who can’t reproduce. In the animal world, and in the human world, too. (What, you didn’t think animals went through menopause? Honestly, neither did I.)

I want the time and space to create. I find myself brimming with more creative energy than I’ve had in years, and I want to feel well enough to use it. I want to write, make jewelry, paint, garden. This morning, as I lay awake in the predawn hours, I found myself planning sewing projects — me, who barely knows how to use my own sewing machine. I want to try my hand at cooking new dishes, take up new hobbies, learn. I want to put more time and effort into the Etsy store I created with my daughter.

If I weren’t laid up in agonizing pain for great portions of my life, just think of what I could do with all that time. It could be the start of a whole new life for me.

Like this:

One of the hardest things to overcome is the fact that our experiences are immensely personal. This makes it hard for us to walk in someone else’s shoes, at least without conscious effort. It’s even more difficult to reach understanding on some topics than others.

Menstruation is a minefield, in part because it’s something all biologically female persons do. (Apologies if I phrased that wrong; cisgender female here.) I noticed early on in my menstruating days that women were far less sympathetic towards my complaints than men. If I told a female teacher I was cramping, she’d roll her eyes and tell me to go sit back down. (The exception: Mrs. Nute, my accounting teacher, kept a stockpile of menstruation supplies in her classroom, and let me sit in the restroom for the entire class if that’s what I needed to do. Thank you for that. You restored my faith in women.) If I told a male teacher I was cramping, he’d let me go to the nurse to lie down. It wasn’t until I was much, much older that I figured out the distinction: most women don’t cramp the way I do.

I’ve read that endometriosis pains can be more severe than heart attack pains. Having never had a heart attack, I can’t vouch for that. I can say they’re more severe than any labor pains I’ve experienced (though I had an epidural a few hours in to my induction, so my labor didn’t really get very far). My cramps, at their worst, are so bad that I’ve wondered how a person could hurt that bad and not die. They are by far the worst pain I’ve ever experienced, and I’ve had two major abdominal surgeries.

The other day, I chimed in on a discussion in a menstruation-related group on Facebook. This woman was looking for suggestions for pain relief, as she was having severe cramps and had a class to attend that night. She had already tried heat and stretching, so I suggested my standby nonprescription remedies: Aleve (though I did not mention that I take the prescription dosage, because I’d rather not cause a stranger on the internet to OD) and knee butterflies (opening and closing your knees like a butterfly’s wings while sitting — these have gotten me through many a class and commute). She clarified that the class was a martial arts class, so the butterflies would be impossible. Someone else remarked that taking pain relievers only invited ulcers, and the original poster replied that she refused to take them because she felt cramps were a natural pain to be dealt with by natural methods.

They probably didn’t intend it to come across this way, but that felt like a slap in the face.

I replied that I was glad they had that option, but that some of us have no choice but to risk ulcers.

It was then I realized why all those teachers rolled their eyes at me. At 15, I was experiencing pain like they’d never felt. At 15. The pain, of course, only got worse as I got older.

I get it. I am not immune to the judgy. I am particularly disdainful of my fellow drivers when I get behind the wheel. Listening to my daughter snark at the car ahead of me for having the audacity to stop at a yellow light, I realize what an unmitigated bitch I can be at times. I have been practicing reframing my thoughts: When a driver zooms past and cuts me off while talking on his cell phone, I have been trying to think not “asshole” but “He is probably a daddy, on the phone with his sick baby, and she’s crying for him to come home.” But breaking decades-old habits is hard, and I am far from perfect.

Facebook highlights the judgy in us all. Conversations that used to take place in private settings with like-minded individuals are now broadcast to a town square of people who often have nothing more in common than a person they knew years ago, and everybody feels entitled to add their two cents. Should someone point out that some of the things being said could be construed as hurtful, they are immediately accused of being special snowflakes and derided for having hurt feewings. And the judgement spiral begins.

I blame social media for the great divide in this country. And I’m only half kidding when I say that. We all got along a lot better when we didn’t know how our neighbors felt about stuff.

Joe Hedges, an artistic crush of mine since the late 90s, said that he is in an abusive relationship with Facebook. I laughed out loud when I read that, but it was an uneasy laugh because that’s the most fitting metaphor I’ve encountered yet. Seeing such vitriol spewed by people I consider friends, or at least acquaintances, makes me want to retreat entirely from the world.

So I filter out everyone who doesn’t think just like me, and then I feel like part of the problem.

It would be very easy for me to just flip the proverbial table and give up on people as a whole; I was misanthropic long before FB came along. But this year I am trying to do things differently. So I am instead working on reframing my thoughts and actions.